Treating ME/CFS With Imunovir

Remember I explained that ME/CFS is neither an immune deficiency nor an auto-immune disease? Parts of our immune systems are over-active and other parts are under-active. This means that suppressing the immune system with steroids (as is often done with auto-immune diseases) won't work for us, and stimulating the entire immune system is likely to make us feel even worse. What we need is an immune system modulator, something that will help re-balance our immune systems, restoring the normal Th1-Th2 balance that we are missing.

I learned this fairly early in my illness, but there didn't seem to be many options available for treatment. I tried many herbal supplements over the years that were supposed to be immune system modulators (various types of mushroom blends, for instance), but I never noticed any improvement. I learned about Imunovir years ago, but since it is not sold in the US, I thought it was unavailable to me (my primary care physician didn't feel comfortable prescribing something not available in the US). Then, last year, my Infectious Disease/CFS doctor suggested trying Imunovir - I was thrilled to have a chance to try it after all these years!

It turns out it is fairly easy to get, if you know how. Imunovir has been used safely in Europe and Canada for decades (it has not gone through the FDA process in the US for political reasons, not safety reasons). My doctor gave me a prescription that I faxed to a pharmaceutical distributor in Canada. Imunovir costs $100 for about a month's supply (dosing varies), and there is a $30 shipping fee, but my insurance covers Immunovir at 70% (I have to submit the receipts after I get it), and I can reduce the shipping fee by ordering several months' worth at a time. A friend has told me there is a cheaper generic version (slightly different but similar), but I don't have any details on that.

Dosing of Imunovir is fairly complicated. Apparently, immune system modulators work best by pulsing the dose; a steady dose stops working after a while. I have read all sorts of complicated dosing schedules online, but my doctor suggested a schedule used by Dr. Nancy Klimas, a renowned CFS specialist and researcher: Start with 1 tablet (500 mg) twice a day for the first week, then go up to 2 tablets twice a day for 3 weeks, then increase to 3 tablets twice a day (6 total). In all cases, take Imunovir Monday through Friday and take none at all on Saturday and Sunday. I have read that Dr. Cheney (another renowned CFS doctor) also suggests changing the dose each week and taking it for 2 months, then taking an entire month off.

When I tried to go up to the maximum dose of 6 tablets a day, I had some side effects. I found that taking 2-3 tablets late in the day left me overstimulated and unable to get to sleep. I backed off to 4 per day, taking 2 in the morning and 2 in the afternoon, but then I had some mild immune symptoms (sore throat and aches) after going so long without any overnight and then taking 2 in the morning. So, I have finally settled on my own dosing schedule: 1 with breakfast, 1 at mid-morning, 1 with lunch, 1 after my nap (weekends off), and it seems to be working well for me. To mix it up, sometimes I take only 2 pills a day for a week.

As I explained in my earlier post on my improvement last year, I felt better overall last year, with improvements in energy, more good days, and fewer crash days. Some of that improvement was due to beta blockers and some was due to Imunovir, and it's hard to completely separate the effects of the two for me. Some signs that my immune system is functioning more normally include: fewer crashes, crashing less frequently when one of my kids is exposed to a virus, and a significant reduction in allergy symptoms. I need to go back and quantify the allergy improvement, but it just occurred to me recently that a year ago, my allergies had ramped up significantly and now they are back to being mild. Also, I typically feel the worst in the winter, when there are lots of viruses floating around causing me to crash, but I haven't seen that worsening this year. I also believe the Imunovir has helped me to feel more energetic. I feel more physically and mentally alert now and only have that no-energy, no-motivation, can't-think-clearly feeling on rare bad crash days.

I also believe that Imunovir may have helped me to finally get rid of the Lyme disease I've been fighting for the past three years. With our reduced response to infections, people with CFS tend to have a very difficult time getting rid of Lyme disease and its co-infections completely. I don't know for sure yet whether I am truly rid of Lyme (see my earlier post), but I am off my Lyme meds for the first time in years and so far, so good.

So, I plan to continue to take Immunovir and also want to try it for my son, Jamie, who - as most of you know - has been struggling horribly with his Lyme treatment this past year.

One way to quantitatively measure the health of our immune systems is by measuring Natural Killer Cell function, which is typically low in people with CFS, due to that Th1-Th2 imbalance. I just realized I haven't had mine tested recently, so I will ask my doctor to check mine (which has been historically low) the next time I see her.

Once again, please remember that I am not a medical professional, and the information presented here is just a summary of my own experience and the understanding I have gained from reading research. If I have made any technical mistakes here, please let me know, and, as always, talk to your own doctor about your own unique circumstances.

(NOTE: In an earlier version of this post, I had misspelled Imunovir as Immunovir. I am including this note in the hopes that a search engine will still find this post, despite my mistake).

Hi, I stumbled upon your blog through Joanne's "Looking at Lyme Disease" Blog.

What's the story behind Immunovir? Why is it a political issue to not be able to get it in the US?

I've been thinking about something ever since I read the studies on rituximab on CFS/ME patients in Norway and wondered if that drug would help Lyme disease patients with persisting symptoms. Here you're taking Immunovir, and it seems to have similar effects as rituximab.

What are the risks of taking it as you do? Side effects other than insomnia?

I am wondering if it would help me and others. Why haven't they tried a clinical trial for this for CFS/ME patients? Or has someone, and I just hadn't read about it?

Thank you for sharing your story. I hope you and your son steadily improve.

I don't know the story behind why Immunovir has not been officially approved by the FDA - I don't generally pay much attention to those types of political issues because I have very limited energy and I'd rather focus on healing. It doesn't really matter since it can be easily (and legally) obtained through non-US sources.

Rituximab is an entirely different drug, a chemotherapy drug that attacks part of the immune system and has significant side effects and risks. I am looking forward to more follow-up research on Rituximab, but I wouldn't lump it into the same category as Immunovir.

I've experienced only very mild side effects with Immunovir, as explained in this post, and they were easily addressed simply by adjusting my dose. I don't believe there are any hazards or risks associated with it.

There have been some limited research studies on Immunovir in people with ME/CFS, but like all CFS research, it has been limited by a lack of funding. This link includes mention of an Immunovir trial (note that this article is from 2001, so some of the information is a bit outdated):

http://www.cfids.org/archives/2001rr/2001-rr1-article01.asp

Here's a brief article on using Immunovir for CFS. It references studies but not specifically (note isoprinosine is the generic term for the brand name Immunovir):

Fantastic Sue!I literally forwarded this to my doctor, as I've really, really been considering Immunovir as of late! Thank you for your wonderfully articulate and humanly-written experience and explanation!

So thrilled it's helping you (and the boys).

Answering the "politics" question…it's ALL about money and marketability/patenting. As long as we can get it; we're fortunate.

good info! thx! I like how you worked out the dosing schedule to fit your needs. My dr said that Immunovir was just another way to work on the virus (I have epstein-Barr) but it sounds like that maynot be the case. I am glad to have another possibility to explore!

Well, Karen, your doctor is not necessarily wrong; I think it's just a slightly different way of looking at things. From what I've read, Immunovir is mainly used in Europe against viruses. It's not attacking viruses directly, like an anti-viral med, but is doing a similar job in a different way by helping to improve the immune system so it can fight the viruses itself. In fact, there are lots of healthy people with EBV (some experts say over 90% of the adult population has been exposed to EBV), but it doesn't have any effect of them. The only reason EBV is a factor for people with CFS is because our immune systems aren't working properly.

Thank you for giving me more information on Immunovir, including its side effects and links to research. I didn't intend to lump Immunovir in with rituximab in terms of them being the same kind of drug with the same mechanism - only that they seem to have similar effects on improving fatigue.

I get extremely worse fatigue while on Imunovir. I did enjoy my month off in December and felt improved after the 6 month regimen. But it was not a walk in the park. Its alot of work - at least it is for me, makes me much worse while on it. i can't think, can hardly keep eyes open. I also have low killer cell function and have had chronic ebv due to such.

Wow, that's interesting that you got worse on Imunovir. odd because it has the opposite effect on me - it GIVES me energy. Did you try different doses? I do well on 4 pills a day, but 6 a day was too much for me.

Have you tried low-dose naltrexone? Also helps the immune system and very good for bringing up low NK cell count.

I just came across your blog and found it very helpful! I have had cfs for 26 years and my worst issue issue is chronic swelling and pain my lymph nodes and glands and muscle pain. Did you find that Imunovir helped with that? I am going to show this article to my doctor,

Our CFS specialist is in NYC, but we live in Delaware. In DC, your best bets are either Dr. Susan Levine in NYC (easiest way to get up there is a 3-hr train ride from DC) or Dr. Charles Lapp in NC (Charlotte, I think). Unfortunately, there aren't any well-known ME/CFS experts in the DC area, though you can check these databases for someone who understands the illness:http://livewithcfs.blogspot.com/2011/01/finding-doctor-for-mecfs.html

I've had CFS for 20 years and was treated by Dr Lerner (CFS clinic in Beverly Hills, MI) for 3 years with heavy doses of Valtrex (6 grams/day) and Valcyte (4 - 450mg pills/day). He has an energy index scale that put me at 4 with goal of 7.5 in 10 months. After 2 years I got to 6.5 and after 3 years still at 6.5. My primary care Dr advised me to stop the antivirals and said he doubted they would come back, so I tapered off the antivirals and within 3 months I crashed back to 4. I just started seeing a colleague of Dr Klimas (mentioned in your Jan 2012 blog) and they are starting me on low dose Naltrexone and Imunovir, as well as putting me back on the Valtrex/valcyte 3 pills each/day. So I believe the experts in the CFS field are prescribing exactly what you are recommending. I'll update you after I reach the maximum dosing level which will take 12 weeks.

Thanks for sharing your story! Dr. Lerner is an excellent doctor - glad he was able to help you. I hope the LDN and Imunovir and antivirals work for you.

Here are some additional details of what experience has taught us on dosing of Imunovir which is very important. Also, I don;t know the current status of Imunovir but it was on long-term backorder for a long time, and we had to switch to generic inosine - sold in the US as a supplement, much cheaper than Imunovir - we saw no difference between the two at all so have stuck with the inexpensive version.

I plan to also write a new post next week on dosing of LDN, so stay tuned!

Hi Sue,Thanks for you info on imunovir. i was just reading and interview with Cheney and saw this is what he recommends for increasing Uric acid as it's a powerful scavenger of peroxynitrite - which we CFS people have trouble with.

Question: i looked up inosine and it appears it nothing more than d-ribose? so is imunovir just d-ribose?

also, have you done any heavy metal chelation? i just found you so i'll have a look in your past posts. i am on round 10 of Andrew Cutler's protocl and am feeling improvements while on rounds and off rounds, killer headaches. (so it's doing something).

i wonder how many CFS miss the mercury piece. but i don't want to put all my eggs into that basket and want to feel better soon as i'm coming down to the wire in will to live and motivation to keep at this for decades now. and want to try some heavy hitters, like drugs now.thanks!

Glad you found my blog and are having some success with the heavy metals - that's not something I have tried yet.

Inosine is NOT D-ribose (which is a sugar). From what I've read, inosine's chemical compund is attached to a ribose ring but it is more complex than that.

D-ribose helps with energy production (only mildly for me). Inosine helps to normalize the immune system.

Inosine has definitely been helpful to us - I have seen a great decrease in allergy symptoms, and both my son and I have far fewer virally-induced crashes and overall, more good days and fewer bad days.

thank you. i've been living with CFS for years now onset from 22 vaccines i received in the peace corps in 96. i have not treated with drugs yet, but want to try. i guess i'll try ionsine first as it's available via online.when you say viral crashes, what symptoms do you get with these? when i get a crash, it involved a flu like feeling along my nerve endings, including even more fatigue.thanks

"viral crash" is just our own term at our house! We've noticed over the years that sometimes you crash from doing too much - a post-exertional crash. Sometimes you crash from stress or not resting and taking care of yourself enough. And sometimes, you get exposed to a virus and that causes a crash.

Because of our overactive immune systems, we rarely "catch" viruses, like colds, but being exposed to one can trigger our immune systems into even more overdrive than they are already in, increasing all those immune symptoms. Those exact symptoms - one of the key characteristics of ME/CFS - vary from one person to the next. For me, it's usually a sore throat and flu-like aches, coupled with the no-energy feeling of exhaustion that is so hard to describe to healthy people. In short, feels like the flu. Other people may not get the sore throat, might have swollen glands, or might feel feverish without actually getting a fever.

For us, a viral crash doesn't FEEL: any different than any other crash - it's just a matter of what triggered it to begin. For my son and I, those virally-triggered crashes are always the worst in terms of both severity and duration.

We've noticed a great decrease in that kind of virally-triggered crash since inosine, probably because it is normalizing the immune system so it doesn't overreact so horribly (or so often) to every little thing that we're exposed to.

Hope that helps - again, it's nothing official, really - just what we use to describe that set of events.

Wow. that explains why i'm always sick, but never get sick with colds/flu. that has been confusing to me b/c i know my immune system is compromised, so why don't i get colds? it's in overdrive. ok...another piece to the puzzle. chelating mercury via andrew culter's protocol is helping me incrementally (I'm on round 10 - minimum 100 rounds are needed) and have noticed slight improvements in the duration of good periods of energy. hopeful there that in addition to viral components is the metal component.

my CFS developed after vaccinations. i never had mono or swollen glands.

Vaccines are a common trigger, too - they are just doing what they are supposed to, stimulating the immune system, but some of us are genetically predisposed to ME/CFS and then the stimulus of a vaccine (perhaps at the same time the body is fighting an infection (without you knowing)) triggers the immune dysfunction of ME/CFS to start.

Yes, dosing is the same - Imunovir is the brand name Rx med sold in Europe and Canada; inosine is basically the same compound, only sold generically in the US as a supplement. They are essentially the same.

thank you! here's hoping it helps me. just to note - the chelation i'm doing (frequent low dosing of ALA and DMSA) increases my energy levels very much on days i'm chelating. it could be getting the metals out, but the other thing it's doing is providing a steady and continuous flow of antioxidants in my system. i'd never dosed antioxidants on their half life before - only taking 1-2 x a day. it's a tremendous difference to take on the half life (3-4 hours).

Inosine is not the EXACT same compound as Imunovir but it is very close. We switched to inosine last year and saw no difference at all in how it affects us - still works great! Here is a newer post that includes our dosing schedule (dosing is critical) and a link to the brand we buy from amazon:

I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.

About Me

I'm a freelance writer who loves to read and cook. My husband and I have two sons, and we all enjoy travel and being outdoors. My older son and I both have chronic illnesses, but we focus on finding joy in every day!

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